Bioethics Education, Awareness of Ethics and Dissemination of Knowledge


Journal: pp. 99-208 in Human Genome Research: Emerging Ethical, Legal, Social and Economic Issues, MGK. Menon et al., eds, (New Delhi: Allied Publishers Ltd. 1999).
Author: Darryl R. J. Macer
This paper will discuss several aspects of the issue of bioethics education, focusing especially on school and public education, as university education is the subject of some other papers in this panel. One of the reasons to focus on school education is that almost everyone goes to school, whereas only a few, 10-30% of the population go on to college or university. Therefore if we focus on the university level we will miss the majority who do not attend. Public education is also necessary for covering all those in our society who have no further contact with the formal education system of schools and colleges. I also recognize the need for cross-professional education as discusses at the end of this paper.

"Bioethics" means the study of ethical issues arising from human involvement with life, and could be called simply the "love of life". Love is a broad term, but includes the concepts of balancing benefits and risks. Love is the desire to do good and the need to avoid doing harm. It includes love of others as oneself, the respecting of autonomy. It also includes the idea of justice, loving others and sharing what we have - distributive justice. It includes technology assessment in the biological sciences, and issues that are new and old.

Education before High School

Some people remarked that education should start in the home, and that it may even be in our genes. Let us hope that ethics education and respect for life does reach all people in both these ways, but there is still a need to reinforce it, and to develop this feeling for bioethics as respect for life into something which can help us make value choices in the difficult questions that we face in our life, and we face from biology and biotechnology. There are already some practical measures for environmental education that are included in most countries of the world, from green day, to recycling. The spirit of minimum consumption and avoiding waste is also central to a practical bioethic of behaviour.

In school there is some inclusion of science in the curriculum, and also of environmental education. However there is a range of subjects in which it is included. A general way to survey the teaching of these issues is textbook analysis. In Japan we have surveyed the textbooks used by junior high and primary school students for a number of key words related to bioethics in 1996. What is interesting is that there is almost just as much coverage of these ideas in non-science or social studies books, such as history, Japanese language, English language, for example. Therefore we should not be fixed in the subject that we think of.

In a survey of 1993-1994 textbooks in Japan found that there was inclusion of environmental issues in almost all biology and social studies texts (Macer et al. 1996). There was mention of pesticides in two thirds of biology textbooks, and discussion of technical issues of genetic engineering in most. Genetic engineering was the major topic of the six we chose that did have some benefits and a few concerns included in most texts. There was also some discussion of nuclear power in social studies textbooks. No textbooks mentioned benefits or concerns about the research on computers or fibre optics, and 3% mentioned scientific benefits of animal experiments but no concerns.

Another way of surveying is to ask students what they think about issues of bioethics. This we have started to do with a project called Biocult, begun in the UK. Biocult was the name given to a survey given to young persons between 11-18 years old in Finland, Germany, Spain and the UK in 1996 by researchers coordinated by Mairi Levitt and Ruth Chadwick in the Centre for Professional Ethics, University of Central Lancashire, UK. Three main age groups were selected to represent the ages when children left different stages of schooling. The questions were developed after considering previous studies looking at perceptions of biotechnology and nature. After their discussions with Macer, it was decided that a comparison to attitudes in New Zealand and Japan would be fruitful. In Japan the study was conducted by Hiroko Obata and Darryl Macer, and in New Zealand we secured the cooperation of Ken Daniels and Howard Bezar in contacting local teachers and schools (Macer et al., 1997).

The students were asked, "Q. What sorts of things are you concerned about or worry about at the moment? Write them down in the "thinking" bubbles below" (3 bubbles given). It was an open question, like most of the survey. The concerns were categorized into the following categories: own, family, out, environment, social, animal and biotechnology. In Europe more students expressed concerns outside of themselves (67-84%), then 54% in New Zealand but only 18% in Japan. More Japan students expressed a concern about themselves. There were various images of nature given in fixed and open questions.

An extract from a newspaper on a fatfree gene that a person, Sam, takes as a daily dose, so that he can eat as much as he likes without getting fat is given. Sam's grandparents do not approve. Q. If you were Sam's friend what would you think? Maybe you would like to lose weight - would you want to have "fatfree"? The students who said Sam should take the gene were NZ 42%, J 36%, UK 45%, Finland 37%, Germany 35%, Spain 39%. The most popular advice were: It may have side effects (NZ 35%, J 43%, Europe 29%), and natural ways to lose weight are better (NZ 26%, J 27%, 33%). Comparisons between age groups give us a way to examine how students develop their thinking patterns, and their approach to bioethics problems. A variety of other questions were asked, as will be reported in papers.

Another way is to ask teachers how they think, and if they have taught students about ethical issues. I have not done such surveys in these earlier schools, however some teachers have joined out education network and sent their teaching materials to us.

Bioethics in High Schools

My major focus on education has been at the high school level. This is because during these years students may be at the right age to consider bioethics issues. The main problem is the exam system at the end of school may restrict time and attention given to these issues, however, in some countries bioethics is part of the formal examined curriculum for biology.

Nobody can claim to have the ultimate definition of bioethics, yet the issues included are being faced by everyone and educators have begun to develop approaches for dealing with it in the classroom. An International Bioethics Education Survey was conducted in Australia (A), Japan (J), and New Zealand (NZ) in mid-1993 (Asada et al. 1996; Macer et al. 1996). National random samples of high schools were selected, and mail response questionnaires were sent to a biology (b) and a social studies (s) teacher at each school through the principals. The responses were: Australia (N=251 (47% response) biology; N=114 (21%) social), Japan (N=560 (37%) biology; N=383 (26%) social), and New Zealand (N=206 (61%) biology; N=96 (28%) social). Since then we have continued follow-up.

Bioethics includes the balancing of values and facts, two aspects of human live that face each other at the end of often opposing walls of daily life. Initially, knowledge and teaching of 15 selected topics related to bioethics and biotechnology were compared. A particular focus was on the teaching of social, ethical and environmental issues of in vitro fertilization, prenatal diagnosis, biotechnology, nuclear power, pesticides, and genetic engineering. The general trend was more coverage in biology classes, except for nuclear power, and more coverage in Australia than New Zealand, and significantly less in Japan.

Open questions looked at images of bioethics, and find the views of teachers varied with some differences apparent between practical concerns and vague ones, the former could represent progress towards bioethical maturity. Open comments were also given for the reasons why about 90% of teachers thought bioethics was needed in education. Open questions on teaching materials, current, led to the development of teaching materials available globally on Internet <http://eubios.info/TM.htm">, and a bioethics education network in Japan. The complete open comments have been published in English (with Japanese comments translated) (Macer et al. 1996).

Attitudes to, and the practice of, animal experiments were also surveyed finding more teachers expressed concerns about animal rights or experiments in New Zealand, then Australia, and least in Japan. Among the biology teachers, 90% in New Zealand use animals in class, 71% in Australia and 69% in Japan. About two thirds of all the samples said that they had had ethical concerns about animal experiments, which were examined in responses to open questions. The concept of humane use was expressed less in Japan than Australasia. 72% of biology teachers in NZ, 63% in Australia and 12% in Japan said there were guidelines at their schools for using animals in class. The impact of animal welfare guidelines on teachers attitudes is discussed, together with the general attitudes to animal use.

During 1993 we also conducted mail response surveys among the general public in these three countries as well as in Hong Kong, India, Israel, The Philippines, Russia, Singapore and Thailand, with collaborators (Macer, 1994). That International Bioethics Survey was performed in order to look at how people think about life, nature, and selected issues of science and technology, biotechnology, genetic engineering, and genetic technology. In all countries of the International Bioethics Survey there is 90+% support for "including discussion of social issues associated with science and technology in school, so that students can participate in contemporary debates". It therefore appears that there is very widespread support for inclusion of bioethics teaching in schools. As we found in the education survey, teachers were even more supportive.

In 1996 the survey was repeated by Cynthia Pandian (1997) of the University of Madras, among 100 biology teachers in Tamil Nadu, and in 1997 by Ong and Macer in Singapore among 29 science teachers. There were some interesting comparisons. The first question of the survey was an open question on the image of bioethics (Table 1). In Japan and India 40% of the teachers said it was respect for life, significantly different to the more practical image in New Zealand, Australia and Singapore. There is a need to develop practical issues of bioethics for teaching, beyond a general respect for life.

Table 1: Images of bioethics shared by biology and science teachers

%
NZ
Australia
Japan
Singapore
Tamil Nadu
Not Stated 6 5 29 43 25
Respect for life / Providence 5 2 37 0 42
A very important subject 1 0 2 0 5
How we should use life 29 27 7 7 0
Science/Biology raises issues 32 29 2 29 6
People face issues 0.5 0 1 0 0
Debate is useful 1 0.4 3 4 0
How to apply / use Biotechnology 24 33 9 7 6
Environmental issues 7 4 6 0 0
Animal rights/experiments 18 8 1 4 0
Human Benefit/rights 2 3 9 0 3
Medical issues 4 14 6 4 5
Other 2 0 7 0 0
Don't Know 0 0.4 2 4 8

Table 2: Teaching of social, ethical and environmental issues by biology or science teachers

New Zealand
Australia
Japan
Singapore
Tamil Nadu
In vitro Fertilization:

social & ethical issues

77 87 57 21 32
Prenatal Diagnosis:

social & ethical issues

67 74 40 18 40
Biotechnology:

social & ethical issues

51 67 47 21 24
Biotechnology:

environmental issues

46 49 39 32 44
Nuclear Power:

social & ethical issues

60 61 25 29 20
Nuclear Power:

environmental issues

86 77 66 75 28
Agricultural pesticides:

social & ethical issues

59 43 18 4 8
Agricultural pesticides:

environmental issues

86 90 52 54 36
Genetic Engineering:

social & ethical issues

85 90 52 39 36
Genetic Engineering:

environmental issues

44 53 30 0 56
Bioethics 67 70 45 4 16
Eugenics 36 38 38 7 60

When asked for a need for bioethics education, about 90% of teachers thought it was needed. However they were short of teaching materials, and since 1994 teaching materials have been developed and placed on the Internet in English and Japanese (Asada & Macer, 1997). Since the first edition, pictures and illustrations have joined questions, as a basis for the materials to be more interesting for students. The revised teaching materials were then announced by sending a fax to all high schools in Japan (5000+). Over 800 replies were received requesting materials, which were sent free of charge to the teachers. We do receive some comment sheets from students who used these sheets, but not very much feedback.

In addition to the advertisement for receiving teaching materials we announced the establishment of a bioethics education network. There are currently 40+ members of this network, from both biology and social studies backgrounds, and it is also on the Internet. One of the basic purposes of the network is that isolated teachers will be encouraged by exchanging ideas and information with each other. The 40 teachers come from 14 different prefectures mainly in the Kanto area (centred around Tokyo). The network has had four bimonthly meetings, in which 12-20 teachers participated in.

Education in University of Tsukuba

There are two formal courses that I teach in the University of Tsukuba to undergraduates and one to postgraduates. Each course is ten lectures. In addition in a weekly class of 30 lectures the topics of bioethics, research ethics and genetics are discussed with reference to recent scientific papers and news stories from Nature, New Scientist or Science journal.

The undergraduate bioethics lectures that are given are: Introduction to ethics, autonomy, justice, bioethics; animal rights; environmental ethics; informed consent; euthanasia and terminal care; brain death and persistent vegetative state; organ transplants; human embryo status and abortion; fetal tissue transplants and reproduction; assisted reproductive technology; cross cultural bioethics (with visiting lectures and attendance at conferences); release of transgenic organisms and dangers of genetic engineering; Human Genome Project; Life and economics, and patenting of genetic material; Genetic diversity; Genetic screening; Genetic information and privacy; AIDS testing; Eugenics; Human gene therapy; Human genetic engineering and our future. The courses look at bioethics as the study of the ethical issues of life. Also at the bioethical issues raised by the use of genetic technology in medicine and agriculture. We will discuss the science, ethics and legal aspects from an international perspective. The courses focuses on making decisions in a balanced and rational way.

The postgraduate course in the Master's Program in Environmental Sciences looks at human relationships with the environment, and the lessons we can learn for a sustainable coexistence. Some of the bioethical issues raised by the use of technology in the environment are a major focus. We will discuss the science, aesthetics, ethics and legal aspects from an international perspective. How can we make balanced decisions preserving the harmony of nature and life in a modern age dominated by economic forces? The lectures include: 1. Introduction to bioethics and environmental ethics; 2. What can we learn from relationships with nature?; 3. Sustaining biodiversity, patents on life and genes, economics; 4.Animal rights; 5. Dangers of genetic engineering; release of transgenic organisms. 6. Cross cultural bioethics and international regulation; 7. Science, technology and environmental risk assessment; 8. Pollution, disease and the environment. 9.A sustainable environment in the technological age; 10. Discussion. It is also open to Ph.D. students, but their seminar in bioethics is more informal.

World-wide there is considerable variety in the requirements for ethics courses in university education, even within medical school. There are several international networks, and attempts made to share curriculum between them. Some basic issues are whether to teach ethics in formal class-room settings, or in seminars or practicals when students are actually facing the real dilemma. Both have merits, and some time should be given to teaching.

Education of professionals

Most professionals were educated at a time when ethics was taught less, and there was less general consciousness of the broader environmental, ethical and social consequences of choices people make in use of technology. Also there is a tendency to become over-specialized and focus on a particular research area, perhaps blind to broader issues. There is a whole field of scientific ethics and research ethics, which covers issues like authorship, plagiarism, research fraud, conflicts of interests. In 1993 several scientists, including myself, conducted a series of workshops on research ethics across four major research centres in New Zealand (Macer, 1994). We found many scientists very eager to learn and all had faced dilemmas in practice.

Some academic societies have enacted codes of ethics to give practical guidance on some common problems, the same as the way some medical doctors have followed a Hippocratic Oath or a related medical code for many centuries. However there does need to be some additional discussion or training, as ethics codes alone are not sufficient for practical life.

Information from different fields is also essential and that is one of the functions of the Eubios Journal of Asian and International Bioethics, published by the Eubios Ethics Institute. It is on-line, and the news files on 31 topics of environmental and medical ethics are updated since 1990, together with a number of books published by the Eubios Ethics Institute <http://eubios.info/index.htm">. There is a genetics and Bioethics Network, and readers are welcome to join this to share contacts and ideas to expand bioethics. There a numerous examples of the need for research and education, as shown by the following example.

In the International Bioethics Survey, support for specific applications of gene therapy was significantly less for "improving physical characters", "improving intelligence" or "making people more ethical" than for curing diseases like cancer or diabetes, except in India and Thailand (Macer et al. 1995), but there was little difference between inheritable or non-inheritable gene therapy. In India and Thailand more than 50% of the 900+ total respondents in each country supported enhancement of physical characters, intelligence, or making people more ethical. It could suggest several things: that poor living standards and infectious disease make people more pragmatic about "improvement", or that people in those countries have not thought about the implications (even though they were relatively highly educated samples). It is interesting if this is a general trend in developing countries, as it could have significant implications for international policy.

The UNESCO Draft Declaration on the human genome calls for:

17. States shall undertake to promote specific teaching and research concerning the ethical, social and human basis and implications of biology and human genetics.

18. States shall undertake to encourage other forms of research, training and information conducive to raising awareness of society and all of its members of their responsibilities regarding the basic choices entailed by advances in biology and genetics. They shall also undertake to facilitate an open international debate, ensuring the free expression of socio-cultural, religious and philosophical opinions.

Therefore we can see education is important both of professionals and of the public. The balancing of benefits and risks of scientific advances is a sign of bioethical maturity and essential for a healthy society in the technological age.


References

Asada, Y., Akiyama, S., Tsuzuki, M., Macer, N.Y. & Macer, D.R.J. (1996) High school teaching of bioethics in New Zealand, Australia, and Japan. Journal of Moral Education , 25, 401-420.

Asada, Y & Macer, D. (1997) Establishment of High School Bioethics Education Network, EJAIB 7 (1997), 73-7.

Macer, D.R.J., Bioethics for the People by the People, (Christchurch: Eubios Ethics Institute, 1994).

Macer, D.R.J., et al. (1995), "International perceptions and approval of gene therapy", Human Gene Therapy 6: 791-803.

Macer, D.R.J., Asada, Y., Tsuzuki, M., Akiyama, S., & Macer, N.Y. Bioethics in high schools in Australia, New Zealand and Japan, (Christchurch: Eubios Ethics Institute, 1996).

Macer, D., Obata, H., Bezar, H., Daniels, K. and Levitt, M. "Results of Biocult survey in New Zealand and Japan, 1997", EJAIB 7 (1997), In Press.

Pandian, C. & Macer, D. "Bioethics Education in High Schools: An Investigation in Tamil Nadu with Comparisons to Australia, Japan and New Zealand", pp 390-400 in Azariah J., Azariah H., & Macer DRJ., eds, Bioethics in India (Eubios Ethics Institute 1997).


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